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Laurie:

You are obviously one of the most knowledgeable people on this site. I have read and admired so many of your posts ... and I know a no-nonsense approach is necessary at times -- but looking back, one of your statements has shocked me - sort of disarmed me !

Did you really mean what you said to me? I've reread it many time to make sure I understood the words...

".....To be blunt, if you don't get a lift, you are saying that life is over for him...."

I am confused and ...much more but don't want to type my thoughts for fear of being offensive.

Nancy
 
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Nancy, at the risk of being wrong about what Laurie meant, if you don't get a lift you won't be able to get him out of bed at some point. No way. My husband cannot move his legs at all and his back is weakening. I'm past the point of being able to help him move along a slide board safely (for either of us). That means he'll be bed bound--no showers, no trips out of the house, no leaving the room his bed is in, without a lift. He won't be able to get to a doctor. I think that's what Laurie means. No lift means he spends the rest of his life in bed. It was not meant to be cruel, but honest. Sometimes we just don't want to accept what's coming, and one of the most important things we do for each other here is to pull each other's heads out of the sand so that everyone starts working on getting equipment in place before it's needed. We don't doubt that you love your husband and will take the best care of him that you can, but you need to make him understand that in able to do that for him you need equipment in place early, so that you can practice with it before you need it. Our first few lift transfers were a bit of a mess. Had hubby needed me to move him quickly, we'd have had a mess on our hands. Now we can do it quickly and effeciently--so much more easily than struggling with transfers. Please use this information to help your husband realize that he must get these things he thinks he'll do without.

Nancy, we don't get offended easily here, so please don't be afraid to post and ask questions. We need each other desperately, and you are important to us. As we help you, so you will help others in the future.

Smile--this is a safe place.

Becky
 
Nancy, I just reread your post about how small the space is that you are living in. It sounds like a ceiling lift is what you need. As Diane wrote, you can get a freestanding one, or if you can get it, a ceiling track will take your husband from bed to the toliet and to his chair. Talk to your clinic about having an occupational therapist come out to your house to assess it and give you suggestions.
 
Becky, Thank you for your thoughts and taking time to share with me.
You mention many great ideas and I'm very appreciative.

What you said, and Laurie said, are not the same - but perhaps that IS what was intended.
It's really that I am insecure about my own care giving skills just now and it was a rough
day, am sooo tired and was truly afraid that I might accidentally say something
more strong or rude than ever I intended.

It's been 20 months of me and T 24-7 ... he insists that I am
with him. I am seeking help from the local Bureau on Aging and it seems we DO (Yea!) qualify
for some number of free care giving hours. The wheels of state gov't and insurance move slowly
so I don't think I'll see anyone for a while. In the meantime have enlisted my husband to
invite some buddies over for a few hours in the afternoon so I can escape!
Right! escape to run errands. lol.
Again, my sincere thanks, Becky.
xo
Fondly,
Nancy
 
Nancy, what Becky said is certainly what I meant, and I apologize for whatever distress I caused you.

To confine someone to bed when he doesn't have to be, to live life bedbound when a simple machine and five minutes gets him into a chair and able to be somewhere else, inside or out, just seemed like a very final statement. I was not being negative about your intentions to provide the best of care, but I was pointing out that rather than trying to work around a lift, I would strongly encourage you to figure out how to work with one. That is all.

You only have so much time and energy and emotion, so as you know we try here to direct it to the most benefit for P/CALS. Both of you benefit equally from a lift and suffer equally without it.

I hope this is clearer, as I very much believe you can make this work and that life is the better for it. I would encourage you to try out or at least see in person both a freestanding and Hoyer lift before you settle for one or the other, as they have different tradeoffs and the logistics are obviously a concern for you both. We used the Hoyer exclusively in our hall/bedroom, < 400 sq. ft. or so.

So small space might add a couple of steps. For example, after transferring him to the sling, we had to back out Larry's wheelchair from the room before we could move the Hoyer up to his bed. It's kind of like parallel parking, but I can do it way better than parallel parking. :)

--Laurie
 
Thank you, Laurie.
I plan to find the right lift for us and our home ... and make it work.
I appreciate your encouragement.
 
How are you both doing Nancy? I have been thinking of you. Steph
 
I have been thinking about Nancy a lot today too!
Please let us know how you are doing love.
 
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